My name is Natalia, and about three months ago, I was diagnosed with Polymyositis.
I just went in for a routine check-up at my new physician’s office because I had just moved to Florida from New York. I was going to the doctor’s because my primary care physician back in New York had diagnosed me with lupus.
I had always been very sick as a child and have suffered from numerous medical conditions. I practically lived in the hospital as a child. When I was about 18 years old, I had started to suffer from kidney problems that the doctors had no idea where they were coming from. I had been misdiagnosed about two times until the final doctor I saw in New York confirmed lupus. I had all the symptoms and what not.
When I came to Florida, I met with a new doctor and explained to him that all the problems had started when I was 18.
He believed I had lupus, but to be completely sure, he wanted to run a completely fresh bloodwork screening. When my results came back, my CPK was outrageously high and abnormal along with other things. I was at work when I got the initial call from the doctor that I had “a rare inflammatory muscle disease called Polymyositis.”
I didn’t cry nor did I feel sad. I mean, I knew something was wrong with me. I was in an initial state of shock for the most part. I later went to a rheumatologist, and he confirmed my primary physician’s diagnosis of the disease as well as scheduled me for a biopsy of my muscle tissue. I am now currently waiting for my results and living with the pain.
It’s difficult because nobody really understands or knows what it is when they ask me about it. There are some days when I am okay and the pain is tolerable and then there are other days (like today) when getting out of bed is a challenge. It sucks because I’m only 22, nobody in my family has this disease, and although they are supportive, they don’t understand.
Sometimes people think I’m lazy because all I want to do is sleep, but when I’m in pain and every muscle in my body is aching, that is all I can do. The disease has put such a limit on the things I once was able to do. I try to take the good days with the bad, trying to make the most out of the good days. I mean, that’s all I can do.